tag:blogger.com,1999:blog-19920594291247709652017-09-23T18:45:50.439+01:00Everyday WishesOrdinary life in extraordinary circumstances. Living with a rare chronic illness, but at the same time trying to be a domestic goddess: baked and knitted goodies abound here.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.comBlogger77125tag:blogger.com,1999:blog-1992059429124770965.post-55411108118376670452013-11-18T09:47:00.001+00:002013-11-24T16:00:24.951+00:00Useful Aids Part 1: IntroductionThis is the first part in a short series on aids and adaptations, so it seems a good time to explain my own personal position.&nbsp;<div><br></div><div>When my disability first started to really affect my ability to function on a day-to-day basis, the first thing that I did was turn to a disability catalogue and see what was out there to help me. There were, and are, lots of ingenious things on the market to make life easier for people with disabilities. Many of these aids are very expensive. If I can improvise a cheaper solution, I often prefer to do so.&nbsp;</div><div><br></div><div>It's easy to get so used to using an aid (sliding board, special cutlery, etc) that it becomes very difficult to move outside one's own environment - either I have to bring all my own cutlery everywhere I go, for example, just in case I decide to stop for a snack, or I miss out. Covering all eventualities can make for a heavy handbag! Wherever possible, I try to learn how to manage without aids, even if I do then use aids most of the time.&nbsp;</div><div><br></div><div>All this stands within reason - if I can't adapt my way of doing something to avoid the need for an aid, can't make or buy a cheaper alternative, then I need an aid. In this case, there's often a choice, and I'd like to share with you, through this series, some of the aids that I do use regularly, why I use them, and some of the other options that are available.&nbsp;</div><div><br></div><div>Finally, I'd like to remind you about why I need to use these aids in the first place. I have Ehlers-Danlos Syndrome, which means that my joints dislocate very easily. I don't have much strength or joint stability. I have breathing difficulties, chronic pain, a hearing impairment, dysautonomia, gastroparesis and dysmotility, bladder dysfunction, and immune/endocrine problems. I know others with the same condition who use far more aids, and others who use no aids at all. None of us are affected the same way by our conditions, and we each have our individual preferences as to how we deal with our impairments. This series is based on my own personal experience, so while I try to be objective, my opinions might be very different from yours!</div><div><br></div><div>While I'm preparing my list of aids that I love, why don't you tell me about yours? What do you find really helpful? What was a waste of space? Are there any aids that you'd sell your own grandmother to own?</div>Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-23875799473041309682013-11-18T09:30:00.001+00:002013-11-18T09:30:38.504+00:00SatyagrahaThere is an opera by Philip Glass about the development of Mohandas Ghandi's philosophy of Satyagraha. It's a compound word from the Sanskrit, meaning "Truth Force" or "holding onto the truth."<div><br></div><div>I was listening to the radio this morning, to a discussion of, among other things, Ghandi's early life. This word, Satyagraha, really struck me. It is necessary to hold onto the bigger picture in order to make change.</div><div><br></div><div>As someone with a disability, I encounter people who see themselves as victims, martyrs, or warriors. These people rail against the injustices and hardships faced by people with disabilities.&nbsp;</div><div><br></div><div>Thinking about the Truth Force this morning has made me think again about why I feel so strongly about patient advocacy. I know that trying to make change from the point of view of a victim is difficult. I need to find a bigger understanding and force to hold onto, which will be the central driving purpose in my advocacy.&nbsp;</div><div><br></div><div>What are your reasons for wanting to make changes?</div>Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-60334973493556558522013-10-01T20:49:00.001+01:002013-10-01T20:49:53.777+01:00I miss my dad<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://lh6.googleusercontent.com/-jI09oYlDYHI/UksnXzMDeII/AAAAAAAAARQ/V2mXJJmNWHY/s640/blogger-image--1201781790.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://lh6.googleusercontent.com/-jI09oYlDYHI/UksnXzMDeII/AAAAAAAAARQ/V2mXJJmNWHY/s640/blogger-image--1201781790.jpg"></a></div><br></div><div class="separator" style="clear: both;">This is my dad. And me. Circa 1983. Note and appreciate the matching Laura Ashley wallpaper and curtains.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Today is my dad's birthday. Or at least it would have been, if he were still alive. He would have been 62 today.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">My dad died three years ago. Time has dulled the pain of his absence enough that I can think of him without feeling that the breath has been knocked out of me, but I still don't know how to treat his memory; his birthday and the anniversary of his death.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Dad was a very private man. He loved Manchester United football team, his family (possibly in that order), books, music and films. He laughed generously and often, and loved to play mischievous tricks. He loved words, and playing with words.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I still find myself storing things up to tell dad. New words, jokes that would make dad laugh, books and films that he'd love. I feel so sad to think that I can never share these things with my dad again. It diminishes my pleasure in life knowing that I can't share any of the things I love with dad.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Richard and I saw Bill Bailey live on Saturday. I loved the show, but found myself thinking over and over how much my dad would have enjoyed it. I desperately wanted to share with dad the word, incretinate. To make stupid, cretin-like. I wish I could share Tim Minchin's song, Prejudice. Dad would have got even more joy, if that's possible, than I do from the use of the word homonym.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">My dad loved Hilary Mantel's Wolf Hall. He was so jealous, as I started reading it, that I would get to spend time with the characters that he'd followed. I felt so sad, reading the fabulous sequel that dad would never read, and learning what happened next.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I feel deeply and intensely grateful that my dad passed on his love of life, his humour, his interest in books, films, politics and music to his children. I wish that I could still share these things with my dad.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I wish that I could just have one more year of forgetting dad's birthday, exchanging books, poetry, films and music; of timing my phonecalls to coincide with the football half time (or full time), hearing dad's tone change from reluctant 'hello' to delight at hearing from his favourite (only) daughter.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I never questioned my dad's love for me or my siblings. He took such delight in all of us, and celebrated our differences. He was interested in everything that we loved, and listened so intently as we shared our lives and interests, from rugby to classical music, the psychology of teaching to politics.&nbsp;</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I want to celebrate my dad on his birthday, but I still wish so much that he were still here.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div>Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com2tag:blogger.com,1999:blog-1992059429124770965.post-71974886652894594512013-05-19T16:37:00.000+01:002013-09-01T15:42:04.061+01:00Only Our Minds Disable UsOf the hundreds of tweets that have floated past my eyes recently, one in particular stood out for me (I'm going to gloss over the one about 'cockwombles').<br><br>It went like this:<br><br>"Never a fan of hearing 'only our minds disable us' coming from anyone, especially high profile disabled people. It's not a helpful message"&nbsp;&nbsp;&nbsp; @pseudodeviant<div><br></div><div>It is a comment about the view of disability that portrays people with disabilities as able to achieve powerful things by determination alone. I was utterly glued to the Paralymics this time last year. I was transfixed by the incredible feats of athleticism from people who only a generation or two ago might have spent their lives in institutions. Let's take the wonderful Sophie Christiansen OBE as an example. Sophie is 25 years old. She has competed as an equestrian in three consecutive Paralympic Games, winning medals at each one, including five gold medals in London last year. Not content with being a phenomenal athlete, Sophie also has a first-class masters degree in maths.&nbsp;</div><div><br></div><div>I don't want to take anything away from Sophie and the other Paralympians, who have obviously dedicated themselves to their sports, and all the commitment and mental and physical strength that entails. Winning a Paralympic medal (or heck, even just qualifying for a Paralympic Games) is an awesome achievement.&nbsp;</div><div><br></div><div>However, in my experience, there is a tendency for people to make comparisons. Often, the comparison is not very specific. I am perhaps one of the least athletic people in human history, and yet I couldn't count the number of times I've been asked if I've considered competing in world class sport, simply because I have a visible disability. For the record, no, I haven't considered it. Day-to-day life is more than enough of a challenge for me.&nbsp;</div><div><br></div><div>During the Paralympics, the message of hope was repeated like a mantra: set your mind on it, and you can achieve anything.&nbsp;</div><div><br></div><div>In my own personal experience, that just doesn't ring true. One of the things that I find most difficult about my condition is its unpredictable nature. Almost every day I am determined to do things, and almost every day my body rebels, leaving me flat on my face, flat on the sofa, or in hospital yet again. I push myself to socialise, bake, knit and read, and most recently, to go out every day. Sometimes it works, and I appreciate the wisdom of those motivating chants. Other times my body insists on full payback. It is during those times that I struggle most with feelings of inadequacy and guilt.&nbsp;</div><div><br></div><div>I try to be forgiving of my body's weakness, working patiently to increase my strength and stamina, despite the symptoms that I experience of a daily basis. Improving my attitude is a big part of increasing my quality of life, but it has to include acknowledgement of my disabilities. My achievements are made with the body that I have. I have to know my weaknesses and work with them.&nbsp;</div><div><br></div><div>I have encountered plenty of people with negative attitudes towards their disabilities. Those who drop everything and wait to get better before they can get on with their lives; those who refuse to do anything for themselves; those who allow their condition to take over every aspect of their lives, or who become bitter and angry. These people, although their disability is in their body, also shackle themselves with their minds.&nbsp;</div><div><br></div><div>Disability is not all in the mind. A good attitude is unlikely to produce miracles, but a bad one will always drag you down. &nbsp;As one of my friends used to say, "Love life. Dream big. Be positive!"</div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br><br><br></div>Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com1tag:blogger.com,1999:blog-1992059429124770965.post-62136945590014845332013-05-02T22:04:00.000+01:002013-05-02T22:04:39.404+01:00On Being Neurotic (or not)One of the things about being a young female with multiple troublesome symptoms is that at some point, it is almost inevitable that a medical professional will suggest that there's an element of neurosis.<br /><br />In the best case scenario, there is incontrovertible evidence of physical disease and/or you find a team who believe your pain and other symptoms, and are prepared to work with you to find solutions. <br /><br />The worst case scenario (and there is no fiction in this) is that the words 'neurotic' or 'hysterical' attach themselves firmly to your medical record, colouring every decision and every consultation. It's very hard to get an independent opinion on anything if even new doctors have those perjorative words ringing in their ears. If your doctor is convinced that you're the sort of anxious soul that makes mountains out of molehills it can be almost impossible to get any investigations done, let alone appropriate treatment.<br /><br />Thankfully, although there have been plenty of doctors and nurses who've suggested that I'm 'just anxious', the physical evidence has always been there to convince them otherwise. I remember once as a teenager being wheeled into the A&amp;E department of my local hospital by paramedics, in the middle of a severe asthma attack. The first nurse that we encountered told me very briskly that she couldn't hear a wheeze, and therefore I was probably having a panic attack, and should really pull myself together. Of course, when the doctors came in, they checked my blood gases (a measure of oxygen and carbon dioxide in a sample of arterial blood) and found that my oxygen was critically low and my carbon dioxide was beginning to rise. Both of these are signs of potentially life-threatening asthma. The reason that there was no wheeze to be heard was that there was almost no air moving in or out of my lungs. This is not generally considered a sign of teen angst.<br /><br />Needless to say, I didn't die from that particular asthma attack (or any of the others that I've had since that time), but it scares me to think that the prejudices of one single person could have had very nasty consequences. <br /><br />&nbsp;I have heard many horror stories from other people, particularly those with gastroparesis, which is hard to diagnose without a high index of suspicion. The symptoms, much like a psychiatric eating disorder, can include vomiting after meals, aversion to food (hardly surprising if it always causes pain and/or nausea/vomiting), weight loss, bloating... If a 'diagnosis' of an eating disorder with attention seeking behaviour is made before a gastric emptying study can be performed, the person with gastroparesis may be sentenced to months or even years of inappropriate treatment and suffering before getting a proper diagnosis. Of course I assume that eventually they will succeed in getting a diagnosis and effective treatment. Everyone likes a happy ending.<br /><br />The suspicion of neuroticism seems to rise in proportion to the number of vague or unexplained symptoms. Therefore syndromes like Ehlers-Danlos, systemic lupus erythematosis, and so many other syndromes or illnesses have a high proportion of people who were diagnosed long after first presenting with symptoms. In some cases this is down to lazy thinking or lack of knowledge. I freely admit that Ehlers-Danlos is rare, and therefore not at the top of the list of differential diagnoses for most doctors, but when a patient presents repeatedly with a host of unexplained symptoms, sometimes there is a link, and sometimes that link is a physical condition that can (and should) be treated.<br /><br />Of course I understand that doctors do see patients who are neurotic or have health-related anxiety; people who present with mysterious symptoms that don't respond to conventional treatments. My plea to doctors would be to keep the flame of diagnostic curiosity burning, even if it's right at the back of your mind. By all means, encourage people to develop non-medical coping strategies and try to reduce the number of inappropriate investigations or invasive treatments, but keep your mind open, and be prepared to pursue a non-psychiatric diagnosis if the evidence seems to be pointing that way.<br /><br />"When the facts change, my opinion changes" - John Maynard Keynes<br /><br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-8289199787366726142013-05-01T22:27:00.000+01:002013-05-01T22:27:14.135+01:00I'm Coping (aka Managing Expectations with Doctors)Crystal from <a href="http://livingwellwithgastroparesis.com/">LivingWellWithGastroparesis.com</a> commented recently that she has a standard answer when people ask her how she is: "It's been a lot, but we're hanging in there."<br /><br />I say the same sort of thing, and wonder how many other people gloss over the difficulties inherent in living with a chronic illness of any kind.<br /><br />One of the problems for me is that I smile a lot. I don't drop the smile for many people, even for my doctors, so the general consensus tends to be that I am doing well. As a result of this, I somehow managed to slip through the net of follow-up with my gastroenterologist. I thought that I was doing ok, and that I could cope without any help. My doctors thought that I was doing ok because I didn't contact them to find out why I hadn't been sent an appointment.<br /><br />By the time I did see my doctor (at least nine months later than I should have seen him) things were not good. I was severely anaemic, acidotic, and almost bedbound. I told my doctor that things were not good, and he immediately arranged for me to be admitted to hospital. I couldn't even cry with relief because I felt too ill. Instead, I lay across the seats in the waiting room and concentrated on not vomiting while I waited for a bed on the ward.<br /><br />How did things go so wrong?<br /><br />I think it started when I left hospital. I had been in hospital for almost a month, and was desperate to be allowed home because we had guests coming to stay with us. This deadline meant that I absolutely jumped at the chance to be allowed to leave, and didn't make sure that everything was in place to support me as an outpatient.<br /><br />When I left hospital last year, on a Wednesday or Thursday night, I didn't even have enough medical supplies to get me through the weekend. I had no follow-up arranged with either my Gastro doctor or dietician, and couldn't get hold of my GP at such short notice. I was being sent home on tube feeding, having not reached any of the feeding targets set while I was in hospital, and without any clear guidelines.<br /><br />How will this admission be different?<br /><br />While we know more about the problems this year, and have a clearer diagnosis, the situation isn't that dissimilar. I am actively losing weight (one of those rare situations in which this is not considered a good thing!), am malnourished, anaemic, and experience severe pain, nausea and bloating in response to even the lowest rate of tube feeding. Last year we tried a number of different feeding preparations (low calorie, high calorie, semi-elemental) and lots of different ways to increase the rate. We tried feeding at a very low rate, 24 hours a day, and gradually increasing. We tried increasing rapidly in an attempt to shock my body into cooperating. We tried regimes that involved timed increases and decreases in rate. Nothing really worked, and nothing has really changed.<br /><br />Currently, I am on TPN (complete nutrition, given to me through a drip into a large vein). It's great as a short-term solution to stop the weight loss and provide my body with some of the nourishment it so badly needs, but there are serious risks and complications, so we are all working towards getting my gut working! <br /><br />Before I go home, I need a plan to follow - how we are going to increase the rate of feeding (or how I'm going to stay nourished and hydrated), and I need to know who to contact if things go wrong. Going wrong is something that also needs to be carefully specified - I want to have clear goals so that I know if I'm not meeting them. I want to have a time frame in mind, with an appointment booked for the end of that trial period.<br /><br />I've talked about 'SMART' goal-setting in the past (as described by Paul Meyer in Attitude is Everything), and this is something that I intend to use again when we're discussing how I'm going to manage when I leave hospital.<br /><br />1. <u>Specific</u> goals, and a specific plan telling me how to achieve those goals (e.g. increasing the rate of feeding by 1 ml/hr per day, up to a target rate of 80 ml/hr)<br />2. Agreed parameters for me to <u>Monitor/Measure</u> so that I know if things are not going according to plan. This is important. Doctors (and other medical professionals) are often vague about this, saying "Get in touch if things get any worse (or if things don't get better)". This leaves people with the dilemma of knowing that things have deteriorated (but maybe not enough to bother the doctor), or not improved (but maybe they should give it another day or two). Numbers are helpful, e.g. body weight, calories per day, pain score.<br />3. It is important for the goals to be realistic and <u>Achievable</u>. Nobody benefits if I go home from hospital intending to gain 1 kg every week and increase my feeding rate by 20 ml/hr every day. We know that my body can't tolerate that sort of feeding rate. Setting unrealistic goals is one of the surest ways for me to get disheartened, and probably end up back in hospital, sicker than I was before.<br />4. The goals and things to monitor must be <u>Relevant</u> to the situation. Monitoring my blood pressure or body temperature, for example, are useful things to do, but aren't directly relevant in determining whether I'm meeting my nutritional goals. Try to narrow down the list of things that can be measured to ensure that you focus only on the most important. Anything else just clouds the issue.<br />5. Set a <u>Time limit</u> on your goals, and be sensible about it. When I leave hospital after this admission, I hope to have gained weight and to have increased my body stores of various nutrients. This might be enough to keep me alive for several months, even if I fail miserably at tube feeding, but it would be far better for me to meet with my gastroenterologist or dietician after 3-4 weeks to discuss progress than for me to keep plugging away at my goals, independent of medical supervision, until I am a skinny wreck! Timely progress assessments will allow me to modify my goals and methods, and to put extra support in place if necessary, before I crash and burn.<br /><br />In addition to the SMART categories, I will ask my team for their<u> 'deal breakers'</u>. These are the things that cause all other plans to grind to a halt. In my case, getting a high temperature has its own set of rules. If I start to run a fever, the SMART plan goes on the back burner and I have to seek urgent medical help. A more relevant deal breaker might be if I drop below a certain body weight, or fail to meet my daily calorie target for a specified number of days. These things are important enough toindicate that the current plan is not working, and that we need to regroup more urgently and come up with a new plan. <br /><br />It is helpful to have these 'deal breakers' written down and specified, with a plan of action in each case. This is often presumed to be in the realm of common sense, but I can promise you now that my common sense goes out of the nearest window when I'm trying to avoid a hospital admission. Having a written (and agreed) protocol in place means that I have no 'wiggle room' to pretend that I didn't understand, or didn't think it was that serious.<br /><br />I've been quite specific in my examples, referring to my own struggles with my digestive system, but this could just as easily apply to someone with rheumatoid arthritis, lupus, asthma or diabetes. Or pretty much anything else. Substitute your own symptoms and goals, and there you have it!<br /><br /><br /><br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-76924772327625678072013-03-25T15:31:00.001+00:002013-03-25T15:31:18.775+00:00A Sign of ProgressI have lots of medical supplies in my bedroom. Most of the supplies are stored in our garden shed, and the majority of the medications that are important enough to be in the house are stored downstairs. Upstairs medical supplies are mostly things that might be needed in an emergency.<br /><br />Most of the supplies upstairs are stored in the drawers under my bed, neatly organised for easy access. In these drawers, I keep various dressings and splints, monitoring supplies and medications that I might need if I'm stuck in bed. <br /><br />Next to my bed I have a set of drawers on wheels. This contains things that I use daily, organised so that I can find what I need (I'll take some pictures for another blog post). Each drawer only contains a couple of different things, out of necessity, as I often find myself rifling through these drawers when I'm half asleep, or trying not to wake my husband.<br /><br />On top of the set of the drawers is a tray. This tray holds a pair of gloves, alcohol gel and alcohol wipes; syringes filled with pain medication and antihistamines, anti-inflammatory gel, scar gel, and my epi-pen. Overnight, this is where I keep my oxygen sats monitor, thermometer and blood glucose monitor (and glucose tablets). There is a torch at the front of the tray so that I can find things in the middle of the night.<br /><br />Last night I needed my inhaler.<br /><br />I looked on the tray, and didn't find it. I looked through each of the three drawers beside my bed, then in the drawers underneath my bed. I looked in the coolbag at the end of the bed (medications I take with me if I'm going out).<br /><br />There were no inhalers in any of these places.<br /><br />Eventually I gave up and asked my husband to get a new inhaler from one of the downstairs storage boxes.<br /><br />It wasn't an emergency, and I certainly wasn't anxious that I couldn't find an inhaler (I found my nebuliser straight away, but decided that I would rather use an inhaler).<br /><br />The significance of this only hit me this morning.&nbsp; I have had very severe asthma for most of my life. I can barely remember a time when I haven't carried an inhaler with me. I have inhalers and nebulised medications in every handbag, along with an epi-pen, steroids and antihistamines. I even keep a hospital bag packed at all times, ready to be grabbed on the way to the hospital (often by a paramedic), which contains lots of asthma medications, as well as a washbag and change of clothes. <br /><br />&nbsp;But I haven't needed to use the hospital bag for eight months. EIGHT whole months without an emergency hospital admission. I haven't had an admission for asthma since 2011. Those of you who have known me for a while will gasp at this, I'm sure - I spent five months of 2011 in hospital with asthma, and averaged 6-12 asthma-related hospital admissions a year for many years. A year without severe asthma seemed completely unthinkable.<br /><br />The fact that I didn't have an inhaler close to the bed amazes me. It isn't just that I have been surviving at home with severe asthma - things have been unimaginably well-controlled for longer than I ever could have expected. Of course, I'm still on high doses of maintenance medications, but my lungs are doing what they were made to do!<br /><br />One of the first things I did this morning was to restock all the places that should have held inhalers (I don't want to jinx myself!), but every unopened inhaler box felt like a celebration!<br /><br /><br />But I haveJohttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com2tag:blogger.com,1999:blog-1992059429124770965.post-66224902445086967722013-03-02T22:09:00.002+00:002013-03-02T22:09:46.726+00:00Getting the Plaster Cast ChangedIf you've read the last couple of blog entries, you'll know that I had surgery at the end of January. It was a planned operation to fuse one of the joints in my left thumb (the metacarpophalangeal joint).<br /><br />One of the thing that I mentioned beforehand was that I was trying to prepare myself for the pain to be more than I anticipated. Despite the preparation, the pain was still more than I had anticipated, not helped by the fact that I don't respond to local anaesthetic, which was the preferred method of pain relief for my anaesthetist that day. <br /><br />The surgical cast (an untidy mix of plaster of paris, crepe bandage and lots of tape) was removed after 2 1/2 weeks so the surgeons could check the wound and check x-rays. I asked the plaster technician how long I had out of the cast. The answer? About a minute and a half. He advised that I get my 'kit' ready while he was cutting the cast, and he'd cover for me while I washed my arm!<br /><br />My kit? The same kit that I use for all plaster changes, regardless of which limb is currently plastered!<br /><br />- Simple cleansing wipes<br />- Liz Earle toner spray<br />- Soft cotton flannel (brand new or freshly-washed)<br />- Moisturising cream (the richer the better - Epaderm is my choice)<br /><br />The plan:<br /><br />I use the cleansing wipes to clean my arm, removing all traces of iodine, chlorhexidine, sticky residue from the dressings, and dried blood. After couple of weeks under wraps, there's plenty of dry skin too, and the chance to rub at some of the itchy parts is blissful! Alcohol wipes are good at removing sticky residue, but are harsh on the skin. There is a time and a place for harsh chemicals and violent scrubbing. In between plaster casts is neither.<br /><br />Once the arm is clean, use the dry flannel to exfoliate and <i><u>gently</u></i> buff away some of that dry skin. I promise this isn't just a cosmetic exercise. The dry skin contributes to the itching, which can be intense. It's hard to explain how all-consuming this itching can be - it wakes me from sleep, and focuses my mind, diverting attention from more important things. I can't concentrate on anything except the need to scratch under the cast!<br /><br />Incidentally, I don't recommend sticking anything down the cast, but if you really must, make sure you it's CLEAN; don't use anything sharp, anything that will leave telltale marks on your skin (using the point of a pen is not a clever idea), or anything that will remain behind in the cast. Apparently, the plaster technicians regularly retrieve pen lids from casts. Adults, my dears, not children - you'd think they'd know better! Anyway, I would recommend gently using a ruler with a flannel wrapped around it. You can dampen the side of the flannel that's going to be against your skin, or cover it with moisturising cream. If you have a surgical wound, do NOT scratch, however gentle you think you're being. Just don't do it. Likewise, if you have fragile skin, an injury that is very unstable, or any increased infection risk, please resist the urge to scratch. The short-lived relief that you might get is not worth the many potential risks - infection, wound breakdown, skin damage/ulceration, and possible injury to the joint. <br /><br />So, back to our nice clean arm: give the skin a nice, gentle but thorough scrub with the flannel, spray with toner (the Liz Earle toner that I use is very light, and made mostly with natural ingredients) to moisten the skin, and scrub again with the flannel.<br /><br />I don't need to tell you to be careful around any wounds, surgical or otherwise. Now is not the time to break open any wounds, or introduce infection. If nothing else, it'll itch even more as new scabs form!<br /><br />Now moisturise well. Epaderm is my first choice. I first encountered it when I was at medschool, doing a dermatology placement. It was prescribed for patients with severe eczema, to use instead of soap, and as a moisturiser. In the UK it's available over the counter from pharmacies. This is not a light, readily-absorbed cream. It is thick and slimy; unscented and uncoloured. I know, I'm not really selling it. However, what Epaderm lacks in cosmetic appeal, it makes up for in moisturising power. This is the moisturiser for neglected feet and hands, left overnight under socks or gloves. Or, as in this case, under tubular bandages, padding and layers of fibreglass for a month!<br /><br />Of course, my arm will still look puny, with wasted muscles and glow-in-the-dark skin, but I've done everything I can to avoid the weeks of itching inside the plaster, and the weeks of flaking skin afterwards!<br /><br />You'll notice that my kit is made up of things that are natural, uncoloured, and unfragranced. I have numerous allergies, and am very sensitive to chemicals in general. Regardless of that, whatever you put on your skin at this point will be held there, in close contact with the skin, for not just hours or days, but weeks, so choose carefully! Now is not the time to try out a new moisturising cream, or to try to mask that 'plaster cast' smell. Keeping your skin healthy is the best way to combat that! <br /><br />Only TWELVE more days until my arm is free!<br /><br />Oh, and the surgeons were very pleased with their handiwork: the scar and the joint fusion underneath. Good news!Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-15737805085132667882013-01-24T18:04:00.001+00:002013-01-24T18:08:10.450+00:00Preparing For and Recovering After SurgeryHaving written about all the cosmetic things I do to keep myself looking and feeling nice while I'm recovering from surgery, I felt that there were also a number of things I would do to help my mental and physical health during the recovery period.<br /><br />One of the things that people never tell you about surgery is how hard that recovery period can be. In an age where cosmetic surgery is touted as a 'quick fix' and an 'easy option', it's natural to lose sight of what actually happens during a surgical operation.<br /><br />In my opinion, surgery is not an easy answer to anything. But, having said that, sometimes surgery is the only answer. Not, in my case, to get bigger breasts, slimmer thighs, or a smaller nose. I have surgery to stabilise my joints on the rare occasion that there seems to be a surgical solution to a particularly problematic (unstable) joint. I have had surgery in the past to remove my appendix, my tonsils and my adenoids, and more recently, to fit a feeding tube into my small intestine, after months of trying everything to avoid the need for surgery.<br /><br />So, we've established that I'd rather not have surgery, and that I would prefer a conservative approach, exploring all other options before resorting to surgery. But now I need to have an operation, and I want to make sure that my recovery is as smooth and straightforward as possible. For me, the key to this is preparation, which falls into three categories: before the surgery, immediately after the surgery (hours and days), and in the recovery period (weeks to months). Of course, the answer always lies in a list!<br /><br /><h4>&nbsp;Be mentally prepared: </h4>Know that after the surgery, you will probably have a wound. This is a cut that goes through all the layers of your skin and the tissues underneath it. If you were lucky enough to have 'keyhole' surgery, you will have several shorter wounds, but they are still wounds, they will still hurt, and they still need to heal. If they are on your abdomen, you are likely to feel them with every movement for several days, if not longer.<br /><br />So you have at least one wound. But the wound is just the access point that allowed the surgeon(s) to get to the part of your body that interested them. If you've had orthopaedic surgery, it is likely that the muscles, ligaments and cartilage around the joint will have been stretched, if not cut, torn or moved and reattached. You may have broken bones (either the cause of the surgery, or resulting from it if you need a joint re-aligned, for example) and pins, screws, plates, and other things that belong in the garden shed, rather than inside one's body. Sutures, staples and dressings all bring their own brand of discomfort, as do plaster casts. Those applied during surgery are unbelievably heavy and unwieldy. You may find that the dressings or stitches cause irritation and itching, and problems all of their own, without even thinking about the wound. <br /><br />If your surgery involved your GI tract, you may find that you have a lot of pain, bloating and distension. The intestine does not like being handled, and will make its displeasure known. Even if your GI tract was left well alone, you may find that the medications given during surgery have a GI effect. Painkillers can cause constipation; antibiotics can cause diarrhoea. If you were ventilated during your operation, you may have a sore throat from the tube, and/or a dry mouth, throat, nose and face from the oxygen and anaesthetic gases. Ah yes, those anaesthetic gases. And the other medications used to induce and maintain anaesthesia. They cause nausea for many people, as do some of the strong painkillers that are often used. Just for a moment stop and imagine how much you would NOT want to vomit immediately after abdominal surgery. Or surgery to your head/neck. Or to your ribcage/lungs/heart.<br /><br />Cosmetic surgery and weight loss surgery get so much coverage, and are now such common procedures that it's easy to forget that they are still surgical procedures. I once had orthopaedic surgery (actually, more than once, but we'll just consider this one example). I was in hospital overnight after the procedure, which lasted approximately half an hour. By any standards, this was a routine, straightforward operation. I left hospital with three scars, each only a couple of millimetres in length, two wires in my wrist, and a plaster cast from finger tips to shoulder. I can't tell you how much pain I had after that surgery. My surgeons had focused on how simple the procedure was (from their point of view), so I was really not prepared in my own mind to have lots of pain as well as the usual annoyances of having a limb in a cast.<br /><br /><br /><h4>Before the surgery:</h4>Prepare yourself mentally for it to hurt a lot. Make sure that your doctor or surgeon prescribes appropriate painkillers for after the surgery and ask if there is anything they can use during the surgery (e.g. a nerve block or local anaesthetic injection) to reduce the pain afterwards, or if they would recommend using TENS, guided imagery, heat or cold therapies. You may find that you only need simple over-the-counter medications and ice packs for a couple of days, but it's always easier for things to be prescribed in advance. If you find that simple painkillers are not enough, chances are that it will be the middle of the night and it's hard to get the on-call doctors to come and assess you (because there's been an emergency, say) and then to write up the medication, which may need to be ordered from pharmacy, while you feel miserable for hours. If it's already prescribed and ordered and you don't need to use it, that's great, but make sure it's there if you need it. I would recommend asking your doctor to prescribe something for nausea as well, to be given if you need it.<br /><br />Discuss any other medications that you take with your doctors and ask if there's anything that you need to stop prior to surgery (e.g. garlic supplements, St John's wort, blood thinners) or anything that you might need to increase (e.g. steroids). If it's likely or possible that you might have problems with swallowing after the surgery, ensure that your medications are written up in alternative forms, e.g. IV. If you take regular medications, make sure that you have a good supply before going into hospital, and if you're started on any medications while in hospital, ensure that you're given enough to last you the full course (or until you can get more from your GP).<br /><br />If you have had previous problems with anaesthetic, or if you have other complex or severe medical conditions, make sure you get blood tests done prior to the surgery (this is usually offered at pre-op assessment, along with ECG testing and x-rays if necessary) and speak to the surgeons and anaesthetists beforehand. If you know that you need things to be done a certain way, don't be afraid to ask. If you're a hard stick for IV access, the anaesthetists can knock you out with anaesthetic gas and then get the IV while you're asleep, if that's more comfortable for you. If you have problems with fasting, ask if you can be admitted the previous day for IV glucose, and/or to have your surgery scheduled early in the day. If you have problems with anxiety, ask for premedication for it. There are so many things for the anaesthetists to consider before your operation, so if you don't mention the things that are important to you, they may not think about them. Don't be afraid to take responsibility for your own care!<br /><br />Think about what you're going to eat and drink for the week or fortnight following the surgery. If you normally cook for other people at home, think about that too. Being prepared for the worst case scenario, assume that you will not cook. If you can, stock the freezer with meals to reheat - making double portions of casseroles, bolognese, etc. for a couple of weeks prior to the operation, and arrange for a friend to bring a meal or pick up something from a local restaurant the first night you're home. If you're not in an area where you can order groceries online for delivery, ask a friend or family member to shop for you for a couple of weeks. Stock up on meal replacement drinks or 'easy' snacks if you think you might struggle to eat 'proper' meals. If you're likely to have a course of antibiotics, consider buying probiotics to use once you've finished the course of antibiotics. <br /><br />If you have pets or children, arrange for someone else to take on the main responsibilities for a while. You can always go with them for a walk, but it can be helpful to know that you don't *have* to go if you don't feel up to it.<br /><br />Consider where you're going to sleep. Is it upstairs? Is that going to be a problem? Is it near to the bathroom if you need to get up in the night? Do you have plenty of pillows and cushions to support you in bed, if that's where you're going to spend a lot of time? Think about how you're going to be able to get to the bedroom, the bathroom, and any other room where you expect to spend a lot of time. You may find that it's safer to have a pair of crutches downstairs and another pair upstairs so that you can shuffle up and down the stairs on your bottom without trying to carry sticks at the same time!<br /><br />If you're on crutches, how are you going to get around the house, and how are you going to carry things? I have a little backpack that I wear around the house. Actually, it has my feeding pump in it, but it has enough space for a bottle of juice (doesn't spill). Consider putting hot drinks in a flask and cold drinks in a bottle for safe carrying around the house. If you think that you might need any equipment (dlf.org.uk has some good examples of equipment or adaptations that may be helpful in various situations), order it with plenty of time. The Red Cross are often able to loan wheelchairs and equipment if you can't get the equipment from your local Social Services department or from the hospital. <br /><br />I always try to increase my protein intake prior to surgery, and take a vitamin and mineral supplement. If you smoke, surgery is a great reason to stop (or cut down, or take a break). Almost nothing else impairs healing quite like cigarette smoking. If you're diabetic, try to control your blood sugars extra carefully in the run-up to surgery. If you're overweight, try to lose some weight; if you're underweight, try to gain some!<br /><br />Recovering from surgery can be tedious, especially if you can't go straight back to work, or back to your usual activities. Set up 'dates' with friends, either for visits in person, or for telephone calls or Skype calls. Now is a great time to stock up on DVD box sets (beg, borrow or buy) and to sign up to a service that allows you to watch films and TV programmes online.&nbsp; <br /><br /><h4>Immediately after the surgery:</h4>Don't leave the hospital without written instructions on what medications you need to take, the dose and the frequency. If it is a short course of medication, make sure you know when to stop taking it. Get written instructions about who to contact if there is a problem (including out-of-hours) and what consistitutes a problem. Ask your doctors, nurses and therapists to be as specific as possible. 'Get in touch if things get worse' is a really common instruction, but can leave you with a dilemma if things do get worse. How worse does worse need to be in order to contact a doctor by telephone at midnight? You may have several instructions - if you have a fever, or very fast heart rate, you may need to go back to the hospital, but you may be able to deal with other problems during normal clinic hours or with a visit to your own GP. If possible, let the professionals make these decisions for you! <br /><br />Take your medication as prescribed. Painkillers work much better to prevent pain than to stop it once it's got a hold on you (apologies, this is a particular soap-box issue for me!). If you're worried about waking up every six hours to take painkillers, you can ask for a long-acting preparation that only needs to be taken every 12 hours. Set a timer to help you remember to take your medications. Adding new meds can always be confusing, especially if you're exhausted from the surgery and spaced out on medications!<br /><br />Ask for help. Friends and family often say (and mean), "let me know if there's anything I can do" and we don't let them know because we don't like to impose. Make a list of the things that you find difficult after the surgery and show it to friends and family if they express a desire to help. People are often happy to pick up a few extras while they're at the supermarket, and other parents at the school will often not mind collecting your children along with their own. The more people you can find to help, the less you need to ask any one person to do. If you can't cope with the idea of asking your friends to come in and help with housework, now is a good time to pay for a cleaner. It's cheaper than a course of physiotherapy, or having to have your wound restitched because you put too much strain on it too early.<br /><br />Make sure that the house is warm enough/cool enough. Even if you just heat/cool one room, it's important to be comfortable. Trust me, shivering with a fresh four-inch abdominal wound is uncomfortable.<br /><br />Rest, recuperate and DO NOT FEEL GUILTY. Now is not the time. If you need to stay in bed all day, do it. If you can only concentrate on trashy fashion magazines, go for it. Don't push yourself to get straight back to all your usual activities and responsibilities. Sometimes we all need time and space to recover, and no-one will begrudge you a few days in your pyjamas, snuggled up with the cat, especially if you've just had surgery. Don't plan too many activities - this is not a free holiday from work (at least not in the first few days!) but give yourself time to rest.<br /><h4></h4><h4>In the longer term after surgery:</h4><br />Do the things that will help you to maintain your health. There is no point in having surgery in the first place if you then do all the things that your surgeon asks you not to do. You've put yourself through the pain and difficulty of surgery, so you are certainly strong enough to stick to a medication or exercise schedule, prescribed diet, or rehab plan. I understand the temptation to 'just' play the piano a little bit (immediately after wrist surgery) or to 'just' take off the splint for a little while. <br /><br />Follow up with your surgeons and any other specialists that are involved in your care. If your wound is not healing properly, for example, it's better to get specialist input earlier rather than later. If your surgeon has suggested that you shouldn't need to take painkillers after five days, and you are still clock-watching for the next dose after a week, a quick call to your surgeon's office could save you a lot of pain.<br /><br />I've written previously about pacing yourself and setting goals, and those skills are likely to be relevant during your recovery period. Don't beat yourself up if things don't go completely to plan. No-one will blame you if you get an infection, have problems with wound healing, or the surgery is just not a success. Keep dialogue open with your doctors, nurses and therapists, and don't be afraid to ask if you think that you would benefit from counselling, physiotherapy or any other specialist input.<br /><br />If you feel that you would benefit from complementary therapy, or input from another therapist or medical specialist, don't be afraid to ask. Many doctors and surgeons are open to input from complementary therapists, but do check with them first - they may be able to offer some services at the same hospital or clinic, or they may recommend some therapies as being more suitable than others.&nbsp; <br /><br />Remember that your individual surgery may not be a big deal in a surgeon's life. What has a place in his life for a couple of hours on one day, along with several other operations on other people, can be life changing for you. Some surgeons are very good at understanding how much their patients can be impacted by surgery; others not so much. Don't take it personally, but seek support from other sources if your surgeon is not a 'people person'. If he or she is good at the job, and does a beautiful job of the operation, that's enough. There are plenty of other people, professional and otherwise, who can support you emotionally and with the physical consequences of the surgery.<br /><br />Stay positive!<br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-76668238179695293742013-01-23T09:01:00.000+00:002013-01-23T09:01:09.315+00:00Being Prepared for SurgeryBefore we go any further, you should know that this blog post does not contain any medical advice. There are no exercises, no medications (or alternative remedies), no recommendations for tests or monitoring, and no diet guidelines.<br /><br />So, if this isn't a medical guide, what is it?<br /><br />This is a list of things that I do in the days or weeks before planned surgery to make my life easier in the days and weeks after the surgery. Of course, the nature of the surgery will change some things, but I'll try to be as general as possible.<br /><br />Here in the UK, most people will know their surgery date at least a month in advance (for routine, non-urgent procedures). I like to use that time to think about the effects the surgery may have on my life while I'm recovering, and try to come up with as many solutions as possible before the problems have a chance to rear their ugly heads!<br /><br />In my opinion, there is almost nothing worse than feeling weak and feeble, in pain, limited by wounds/dressings/plaster casts. Add to that the feeling of unwashed hair and skin, unwanted body hair, and flaking nails, and it's almost a recipe for disaster! Here are a few of the things that I do to prepare my body for surgery and to keep myself looking as normal as possible afterwards. <br /><br /><h4>Hair:</h4>Book a haircut as close to the date of your surgery as humanly possible - this will ensure that your hair looks as good as possible, even if you're not able to give it much attention. If you have very long, thick or curly hair, consider a change of style to one that needs minimal maintenance. This doesn't always mean short! My hair is wavy/curly and prone to frizz. Short styles, for me, mean endless conditioning and styling products and hours of blowdrying or using straightening irons or tongs. With a blunt cut just above shoulder length, I can get away with scrunching a little mousse through my hair and leaving it to dry naturally.<br /><br />If your hair is coloured, make sure you get your roots done, preferably just before surgery, so that it will look fresh for as long as possible while you recover and build up enough energy to get to the salon for the next colour! <br /><br />Styling your hair may be another hurdle, especially if the surgery affects your hands/arms/shoulders, or is likely to leave you feeling very weak. I recommend investing in the following basic kit:<br />1. Dry shampoo: Having hair that looks bouncy and freshly-washed without getting out of bed is like a miracle! If possible, try a couple of brands and stock up on cans of your favourite in various sizes. You may still need help to apply it, massage it in and brush it out again, but it still takes considerably less effort for both you and your helper than a full shampoo and conditioner, plus it doesn't leave your hair wet, so no risk of getting chilled (or getting wet bedclothes)<br />2. Alice bands and 'crocodile' clips: These are enough to hold your hair back from your face, even if you have one hand out of action. Some people find the fabric bands easier than solid ones, but I'm a fan of the solid ones. The wider the better, in order to cover as much hair as possible! Having the crocodile clips as well means that you can try out a variety of styles with minimal effort or assistance<br />3. A wide-toothed comb is great for gentle hair-styling (or just detangling); if you can get one with a long handle, so much the better!<br /><br />If your surgery means that blowdrying your hair is not an option, there are two things you can do. The first is to resign yourself to having a different style for a few weeks, working with your natural hair texture. As you'll be giving your hair a break from heated styling tools, it's a good opportunity to use intensive deep conditioners. Put a soft towel over your pillow and apply the conditioner. Massage your scalp well, and then comb the conditioner through to the ends of your hair. It can stay there until you next wash your hair. Not particularly glamourous or attractive, but your hair will be in better condition afterwards! The other option is to book a course of regular blow-dry treatments at your hairdressing salon. It's a lovely thing to do to pamper yourself, and may be the only way to get your hair washed and styled properly if you have an arm in a cast, but consider how you're going to get to and from the salon if you're not up to walking and not allowed to drive.<br /><br /><h4>Skin:</h4>After surgery, you may not feel like keeping up with your usual skincare regime. I like to cleanse, tone and moisturise, and have various favourite products to exfoliate and moisturise my skin. This all goes out of the window after any surgery, but especially if I have an arm in plaster. Simple cleansing wipes are my saving grace - they remove everything (even betadine, chlorhexidine and EEG glue - all of which you may encounter during your hospital stay!), and leave my skin feeling lovely. At a pinch, you could use them to wash your body, but I wouldn't recommend doing this more than once! My top five tips for skin have to be:<br />1. If you wax, book a wax prior to your surgery: If you don't wax, think about whether you're going to keep up with whatever method you normally use, and whether it would bother you if you didn't keep up with it. Waxing lasts for 4-6 weeks for most people, and there's nothing quite like feeling smooth and polished when you're a bit weak. <br />2. Simple cleansing wipes<br />3. A pleasantly fragranced deodorant (I find spray easier than any other method of application)<br />4. A real sponge and a mild liquid soap: it's hard to rinse properly if you're washing in bed or in a chair, but it's not the end of the world if a mild soap stays on your skin - aqueous cream can be used instead of liquid soap - it doesn't feel particularly 'cleansing' but it does work, and it'll leave your skin lovely and soft<br />5. A luxurious moisturiser: it may be more difficult to apply, but having the luxury of my favourite scent as well as soft skin is worth the time it takes to apply it! There are lots of different types of moisturiser, depending on your needs - it may be easier to use a body butter that's almost solid and won't run everywhere, a pump dispenser, or a spray.<br /><br /><h4>Cosmetic:</h4>More than any other part of me, my face gives me away after surgery. It takes almost nothing to make me look pale and drawn, with dark circles around my eyes, and it is guaranteed to make me feel worse if I see myself in the mirror looking like that. Of course, there's always the option to just avoid the mirror, but let's assume that we generally like mirrors.<br /><br />Before surgery:<br />1. Shape your eyebrows and wax/thread/pluck any stray hairs<br />2. Get your eyelashes tinted: this is cheap and readily available at salons, and will mean that you don't need to wear mascara for up to six weeks. I have no arguments for the pedants who say that you don't <i>need</i> to wear mascara anyway. I like to have dark lashes, and drawing attention to my lashes and big green/blue eyes is better than drawing attention to the dark circles around my eyes!<br />3. Invest in a cream blush, or even better, a cream product for cheeks and lips: I love the Benefit Benetint lip and cheek balm and Bobbi Brown's Pot Rouge in Powder Pink. Give me 30 seconds with either of these, and I'll magically transform into a healthy-looking creature before your very eyes.<br />4. Get a really good brightening concealer for under-eye bags and any other dark shadows that may emerge post-surgery: My intention is not really to promote lots of beauty products, but I use Clinique's Airbrush Concealer. I've used it for many years, and love it. It is also very easy to apply. Even with one hand. Even if that hand is your non-dominant hand.<br />5. Stock up on moisturiser and lip balm: Hospitals are dry places, and my skin is dry and flaky for days or even weeks afterwards, so I use a much heavier moisturiser than usual.<br />6. Choose some low-profile jewellery to wear while you're recovering: You'll probably have to remove all your jewellery for the surgery (you may be allowed to tape over a wedding band) but you'll need something simple to wear afterwards, if only to maintain piercings (don't forget about belly buttons, tongues, lips, etc. and make sure you have someone ready to put them back in for you after surgery if you can't do it yourself). I usually wear plain pearl or diamond stud earrings, a simple, light necklace, and my wedding and engagement rings, but no other jewellery. It's enough to keep me looking polished, and to keep the holes in my earlobes open, and that's all I need. <br /><br />After surgery:<br />Get a manicure and pedicure: Don't make the mistake of doing this prior to surgery, as you'll just have to take it off, which is a bit of a nightmare if you have a gel or shellac manicure. Once you're safely out of the hospital, book yourself in for a mani-pedi, preferably with gel or shellac polish, which lasts for a couple of weeks without chipping or flaking. I like to get a bright colour on my feet and a neutral colour on my hands - it does have to go with everything for two weeks, after all! If you're not well enough to go out for your manicure, you may be able to find a mobile technician who will come to your home, or even to the hospital. <br /><br />After all this preparation, I'm sure you're just about ready to just get to the hospital so that you can have a break, but three last things:<br />1. Order some pretty seasonal flowers to be delivered a couple of days after you get home from hospital (unless you're likely to be inundated with floral gifts from friends), or buy yourself an orchid in bud, so that it'll flower when you get home and are there to see it.<br />2. Put fresh sheets on your bed ready for when you get back. If you're anything like me, this thought will sustain you through the hard first night in the hospital after surgery. I tell myself that I just have to get through this night (and maybe a couple of others) and then I can go home and snuggle into my lovely soft bed with the clean, fresh sheets, and that means that Everything Will Be Alright.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com1tag:blogger.com,1999:blog-1992059429124770965.post-69715616297344141062012-10-29T15:55:00.001+00:002012-10-29T15:57:19.506+00:00Being Prepared for EmergenciesI'm sure that all of you reading this will have seen the news reports about Hurricane Sandy, preparing to batter the east coast of the US.<br /><br />Being in the UK, this doesn't affect me directly, but it does affect many of those that I love, and it reminds me that emergencies are different for those of us with chronic illnesses or disabilities.<br /><br />Emergencies, when they're not actually happening to me, seem a long way off. Improbable, even. It's that age-old mentality of 'it won't happen to me'. But it might happen to me. Or to you. Really, it might, and there are a few things that you can do to make it less frightening.<br /><br />If you've been reading my blog for a while, you may know that I have a Big Red Folder (blog post about that <a href="http://www.everydaywishes.blogspot.co.uk/2011/12/being-helpful-patient.html" target="_blank">here</a>), where I keep my important medical information. At the very least, make sure that you have an 'executive summary' for each member of your family:<br /><br />Name (including what you prefer to be called - I'm much more likely to respond to Jo than to Joanna)<br />Address<br />Next of kin: Name and contact details - try to include someone who doesn't live with you as well, so that they can be contacted if your borough is flattened by aliens, for example.<br />Current medical issues: Include ALLERGIES and all diagnosed medical conditions, even if they are usually well-controlled. Emergencies have a nasty habit of causing things to flare up. <br />Medications: A list of all medications that you take - regularly and 'as required' or in emergencies (this could be a repeat prescription form from your GP)<br />Previous medical history: Significant illnesses, procedures, surgery, injuries<br />Family history: Keep this brief - just the relationship and names of significant conditions <br /><br />If your medical conditions are atypical, complex or rare (or all three!), I would recommend getting a letter from the doctor who knows you best, giving information about your conditions and treatment, and including their contact details. Alternatively, you could print off some general information about your condition (try the website for the national association for your condition), and include copies of any helpful medical reports or discharge summaries that you have from your own doctors.<br /><br />Put all this information safely into a folder, envelope or plastic wallet, including a soft copy on USB stick if you can.<br /><br />There are lots of different types of emergency, and lots of different types of chronic illness, and I'm certainly not going to pretend to be prepared for every possible incident, but there are things that can be done with relatively little inconvenience.<br /><br />Things to do before any emergency:<br /><ol><li>Register with your local gas, electricity and water suppliers if you have anyone in your family with medical requirements or limited mobility. They may be able to warn you of any planned outages, provide you with bottled water or power from a generator, or arrange other support in an emergency.</li><li>If you're in the UK, I would recommend signing up for emergency 999 text messages (<a href="http://emergencysms.org.uk/">emergencysms.org.uk</a>), especially if you have speech or hearing problems, or breathing problems that can make it hard to talk. On this topic (dealing with the ambulance service), you can ask your GP to request a 'flag' for your address, so that first responders have vital details (e.g. allergies to common emergency medications). I would also recommend getting yourself a MedicAlert bracelet, or similar.</li><li>Keep ice packs in the freezer. Not only are they useful for treating some injuries, they will help to keep the things in your freezer cool in a power cut, or you can use them to keep medications cool. You can also buy 'instant' cool packs.</li><li>If you rely on any electrical equipment (e.g. nebuliser, feeding pump, IV pump, motorised wheelchair), keep them charged if possible. Either have spare equipment (portable) or spare batteries for an emergency.</li><li>Try to keep at least half a tank of petrol in the car at all times, along with a basic repair kit, jump leads, a small first aid kit, a torch, a spade, and an up-to-date map.</li></ol>&nbsp;In the event of an emergency, you may find that you need to get out of the house in a hurry, or that you have to stay in the house for several days. It's always difficult to remember everything, and this is worse if you (and the people around you) are anxious or hurried.<br /><br />Things to pack:<br />Pick a strong bag that is large enough to hold what you need, but small and light enough to carry.&nbsp; Put your most important items into waterproof containers or ziploc bags, and into a lightweight cooler if necessary.<br /><ol><li>Important medical information folder </li><li>Basic first aid: Sticking plasters, triangular bandage, elasticated bandage(s), gauze, medicines to treat headaches, sore throats, allergic reactions, bites/stings; tweezers, scissors, sanitary products, nappies (if you have babies), sunscreen. If anyone in your family has sensory issues or migraines, include sunglasses or an eye mask, and ear plugs</li><li>Medications: I try to pack enough medication to last me for 48 hours. A week would be better, but for me, that brings up a whole other set of problems with being able to carry this kit!</li><li>Durable medical equipment: If you don't use the equipment regularly, make sure that you know where it's kept and that it's kept in good condition. Make sure everything is charged, and that you have spare batteries. A torch, emergency phone charger, and battery-powered radio should go in this kit too.</li><li>Disposable medical equipment: Pack enough to keep you going through as many doses of medication as you are taking with you, plus a few spares. Include tubing, syringes, catheters, needles, medication 'pens', dressings. Take everything you would need in the event of pulling out a tube, falling into a (dirty) swimming pool, getting a blocked tube, or getting a hole in any tubing (including wheelchair punctures).</li><li>Getting rid of waste: Small plastic bags, larger plastic bags (for waterproofing), ziploc bags (for keeping things clean and dry), a sharps bin (if you use sharps)</li><li>Cleansing wipes, tissues, alcohol wipes, anti-bacterial surface wipes, alcohol hand gel, disposable gloves (and sterile gloves if necessary, e.g. if you have a central line)</li><li>Monitoring: This includes blood sugar testing if you have diabetes, blood pressure, pulse, oxygen saturations, temperature, peak flow</li><li>Nutrition: Tube feed, TPN, individually-wrapped snacks, boiled sweets, small containers of UHT milk, bottled water (plus baby formula for babies, and/or food for any pets you plan to take with you), drinking straws (for sharing bottles/cups) and cutlery (a spoon at the very least)</li><li>ID, bank cards, cash, driving licence</li><li>Change of clothes for everyone. This can be as minimal as clean underwear, socks and a hat (for warmth or sun protection), depending on what you can carry, and what weather conditions you expect. Include a toothbrush, toothpaste, deodorant.</li></ol>Emergencies are always stressful and frightening, but if you know that you don't have to run around the house packing, things will be easier. Keeping clean is a major problem, so having plenty of plastic bags and wipes can be useful. They don't weigh much or take up much space, but can make such a big difference in keeping clean and dry, and separating clean things from dirty.<br /><br />Thinking of all those in the path of Hurricane Sandy. <br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-48139160556741594692012-10-01T17:06:00.004+01:002012-10-01T17:06:55.961+01:00An Apology, Some Regrets and a New BaselineFirstly, of course, I have to apologise for having neglected the blog and my readers. There isn't one single, simple reason for this, but be patient with me and I'll try to explain.<br /><br />The end of August saw the first anniversary of my wedding. As I reflected on the last year, and answered questions from friends about the first year of 'wedded bliss', I found myself overwhelmed by all the things that have happened in that time; all the medical and emotional changes that we've faced.<br /><br />It has become increasingly clear that my husband and I are unlikely to have a family of our own.<br /><br />I have a genetic disorder that has an autosomal dominant inheritance pattern. Any 'natural' child of mine would have a 50% chance of inheriting the same disorder. While I don't feel that life isn't worth living, or wish that I hadn't been born in the first place, and while I certainly wouldn't consider this disorder a reason to terminate a pregnancy, it would be irresponsible to plan a family without taking it into account. If a child of mine were to be affected by this disorder to the same extent that I am, I would feel extremely guilty. I have been told by my doctors that it's likely that I would spend much of any pregnancy bedbound, that the baby would possibly (or even probably) be born prematurely, with the risk of uterine rupture, further stroke-like episodes, further damage to my joints and internal organs (including my heart and lungs), and with potential problems for the baby associated with prematurity or rapid labour. Even if I were to 'get through' a pregnancy by sheer grit, determination and obstinacy, it's probable that I wouldn't be well enough to look after a child without a LOT of help.<br /><br />I do know that other people have managed this, and my doctors have said to me that if it's something that is really, really important to me, they are prepared to work with me to make it happen, but they have all emphasised the risks and potential complications. I know that if, in my heart of hearts, I could not live without being a mother, we could make it happen. I don't feel that way, and though I feel sadness and guilt that I won't have children, won't ever hear the word 'mother' applied to me, won't give my own mother and my husband's parents the opportunity to be grandparents (though thankfully my husband and I both have siblings). My husband won't have the opportunity to be a father unless I die soon enough for him to remarry and have children. Obviously, that's not my preferred option.<br /><br />Things recently have been bad enough that even the thought of starting a family has been pushed out of my mind. I can barely lift the kettle three times daily, let alone a child. At first, I assumed that I'd overdone it, causing extra symptoms, but it's now clear that this is probably my new 'normal'. Not only is my baseline considerably lower, causing more symptoms and requiring higher doses of medication, but my ability to handle any activity has dropped significantly. I went to a beautiful wedding ten days ago. I was thrilled to be able to celebrate with a close friend, and rested carefully in the run-up to the ceremony and reception. I timed my medications and rest periods so as to be as well as possible. I 'survived' (and loved) the day, but it knocked me far, far harder than I could have anticipated. I was totally bedbound for a couple of days, and was unable to walk even tiny distances within the house, having to lie flat on the sofa or in bed. My symptoms were completely uncontrollable, even with maximum doses of breakthrough medications, and this has only improved a little bit after a full ten days. I'm used to having to pace myself, and used to having to pay for any fun that I have, but this change is frightening for me.<br /><br />There is still time to recover, given lots of rest, extra medications and IV fluids, but I'm scared that this might not happen.<br /><br />There are so many things that I want to do. There are so many people that I love and I want them to be able to share my life. But I have so little to give. So little energy. I wish that I could give more, but everything I have is taken up with just surviving. The little that I can give to my friends - an occasional visit, postcard or telephone call - seems so inadequate. I am so grateful to my friends and family. They have kept me going, kept my spirits up through all manner of difficulties, and remained loyal and loving despite the hospitalisations, cancelling plans, and all sorts of other difficulties. I wish that I had some way to let them know of my gratitude, or to uphold my side of the relationship; to give back even just a portion of what I am given.<br /><br />It would be fair to say that I am struggling at the moment, both emotionally and physically.<br /><br />Naturally, I am a pragmatist. Things are the way that they are, and if I can't change things, I may as well get used to them and see if I can enjoy things as they are, rather than as I would prefer them to be. I know that things will be ok, but change is hard. Physical deterioration is hard. My failure to be a good wife, daughter, sister or friend is hard. But life is worthwhile. I love the world in which I live, and am grateful to have the opportunity to experience things and spend time with those I love.<br /><br />This is all a part of my journey. Thank you for travelling with me!Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com3tag:blogger.com,1999:blog-1992059429124770965.post-86799809792961594012012-08-14T23:44:00.000+01:002012-08-14T23:51:32.804+01:00Inspirational Poetry and the Ugly Side of Chronic IllnessI can't help but cringe when I see poetry designed to inspire and uplift. I often feel as though this belittles (in twee, and often tenuous, rhyming couplets) the strength that it takes to go through difficult situations.<br /><br />Living with a chronic illness is not pretty. Things that are normally taboo can become a part of everyday life. Diarrhoea, constipation, incontinence, loss of libido, hirsutism (excessive body hair), mental health problems. I find myself concealing the ugly side of my illness from those around me - protecting them from the smells, the mess, the oozing, the unpleasant procedures, the intrusive, bitter, angry and desperate thoughts.<br /><br />I don't want people to know about the ugly side of my illness. I don't want pity, and I don't want them to feel disgusted by me, or by my illness and its effects. So I present an airbrushed picture of myself to the world. I gloss over the parts of my life that might cause people to feel discomfort, censoring the scenes in which I scream with pain, those in which I sit hunched over a pile of cushions, sick bowl clutched in hand.<br /><br />I don't want these things to become the focus of my life. I want to fix my thoughts on the things that make life worth living, despite the ugly bits.<br /><br />But however much I may want to think only about sunshine, lollipops and rainbows, cake, shoes and lipstick, there is urine output to measure, pus to wipe, dislocated and deformed joints to reduce.<br /><br />These unpleasant things tend not to make nice poetry. <br /><br />So we write and quote nice poetry that talks about strength and overcoming adversity, and use words like 'battle' and 'trials' to convey, in a rather abstract way, the unmentionable things.<br /><br />I'm sure this works to inspire some people, but I would really rather not think of my life as a constant battle. I don't believe that I'm being tried or tested. I'm not going to overcome anything. All I can do is live life as well as possible, enjoying the good bits and surviving the bad. There isn't going to be any glory at the end of it all; there are no medals in this game. <br /><br />Of course, my cynicism about inspirational poetry may also come from the fact that I grew up with an amended version of 'Don't Quit':<br /><br />When things go wrong as they sometimes will,<br />When the road you're trudging seems all uphill,<br />When the funds are low and the debts are high,<br />And you want to smile but have to cry.<br />When cares are pressing you down a bit<br />Don't complain to me - I don't give a sh*tJohttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-82903184647378962962012-07-25T19:03:00.000+01:002012-07-25T19:03:20.082+01:00Killing Season (Patient Survival Guide)August is often jokily known as Killing Season.<br /><br />Newly-qualified doctors almost all hit the wards on the first Wednesday of August. Most of the other grades of junior doctors also start new jobs at this time. While this makes the logistics of medical staffing simpler, it can be a scary time for patients, especially those with rare/complex conditions.<br /><br />I'm absolutely not trying to knock junior doctors. They have all made it through medical school, through written finals and clinical finals. They are generally bright, interesting, personable and sensible. They work long hours in a demanding job, often with little support or appreciation.<br /><br />Medical textbooks are often very thick - there are an awful lot of different conditions out there, and there is no way that even the best junior doctor can know everything about every condition. I'm surprised if my condition gets more than a fleeting mention (if that!) in most textbooks. I certainly don't expect very junior doctors to know about my condition, understand how it affects me day-to-day, or make long-term treatment plant. That's why I have specialists (lots and lots of them)!<br /><br />Even if your new doctor has memorised the textbook from cover to cover, chances are that they've never actually met someone with your rare condition. They probably don't know many of their colleagues (or how to get favours to jump the queue for scans, other tests, or specialist review), may not be familiar with the computer system, prescribing system, or test-ordering system. They may not even know their way around the hospital. <br /><br />Last year, during Killing Season, I met a newly-qualified doctor at my local hospital (a large London teaching hospital and major trauma centre). He had been called to see me because my peripheral IV line had blown (again). My veins are notoriously rubbish, but I really needed the access to be able get a medication that was <i>only just</i> keeping me out of Intensive Care. This doctor looked carefully for a vein, and couldn't find one. I told him that I was happy for him to have three attempts, but after that I would like him to ask someone else to try. He said to me, "There isn't even anywhere to try". Fair enough. He's not the only person to have said that. But what he did next scared me. He packed up his cannulating supplies, and walked off, telling me over his shoulder that he didn't think I needed IV access after all. Needless to say, I deteriorated, and ended up in Intensive Care.<br /><br />It's entirely possible that I would have ended up in ICU anyway, but the experience frightened me. <br /><br />So, a few tips for people like me on surviving the Killing Season:<br /><b><br /></b><br /><b>1. Do everything possible to avoid an emergency admission at this time of year</b><br />Avoidance is the best possible technique - give the new doctors a chance to settle in and get confident. Even if these techniques only delay the inevitable, buying time in this situation is a Good Thing.<b> </b><br />- Talk to your specialists in advance, and ensure that you have an emergency treatment plan<br />- Check your medications and make sure you have supplies of emergency medications (check the expiry date!)<br />- Make an appointment with your GP for the start of August. If you don't need it when the time comes, you can cancel it, but it will save you having to go to A&amp;E if you have a flare-up and can't get an appointment to see your own doctor<br /><br /><b>2. Be prepared </b><br />- Make a list of all your medications, including generic name, dose, frequency, route, and the reason you take each medication<br />- Make a list of all your specialists and their contact details<br />- Write an executive summary of your medical history. This is a quick 'basic guide' to your conditions. Include your diagnoses (with a short explanation of how you're affected), any major hospitalisations, procedures or surgeries, and any relevant family or social history<br />- Get a printout of blood test results from when you're stable. If there are particular things that change when you're unwell, also get a printout from a time when you were unwell<br /><br /><b>3. Be kind to the new doctors</b><br />- Don't be sarcastic or aggressive if they ask questions that you think are silly - be grateful that they're asking questions, and use this as an opportunity to educate them about your condition<br />- Don't be upset or angry if the new doctor is patronising. They don't know your background, and will often aim for the lowest common denominator. Yes, it can be frustrating to have doctors talk about 'a little tube' or 'the tablet for your waterworks', but be patient - they'll learn as they get to know you<br />- If you want direct answers, ask direct questions - if you like to know specific blood results, ask<br />- This doctor could be your best advocate while you're inpatient - they're on the wards most of the time, are the ones that see all your blood results (and other test results), will write your discharge paperwork, and will perform most basic procedures (and request the more specialised ones). If they're on your side, you'll have a much easier time<br />- Don't expect the new doctor to spot it when things are deteriorating or improving. This is not a test, and there are no points for detecting 'hidden' symptoms and signs. If you notice something, tell your doctors. If you know how it's been treated in the past, or what it means, discuss this openly with the doctors<br />- Make a plan and agree it with the team (including your specialist) so that the most junior new doctors are not expected to make decisions about long-term care or discharge. Agree specifics, e.g. a peak flow of 75% before discharge and nebulisers not used more frequently than four-hourly, being on 'home medications' for 24 hours before being allowed home, or being able to walk a certain distance without severe pain<br /><br /><b>4. Don't panic</b><br />- If the new doctors are not picking up the hints that you are a well-informed patient with a complex condition and long medical history, and don't seem prepared to treat you as a member of the team, don't give up - talk to other members of the team, or other medical professionals (e.g. dieticians, nurse practitioners), and see if they can lead by example, by involving you in decisions and talking to you on a level<br />- If the new doctor is unwilling to prescribe strong painkillers or other potentially addictive medications, be understanding - not everyone takes these medications legitimately. Ask for a review by one of their seniors, or by the pain team (especially if they know you and your medical history) <br />- If all else fails, bite your tongue and grit your teeth when the new doctor is around. Not all doctors are cut-out for dealing with complex patients. Make only as much fuss as you need to be safe while you're in hospital, remembering that the problem doctor will probably move on to the next job in 3-4 months<br /><br />Above all, be understanding. Your doctor may not have had a lunchbreak or toilet break; they might have been due to go home over an hour ago; they might have just been to an unsuccessful and upsetting crash call. They may be exhausted, overwhelmed, in a new city, far from friends and family, and under pressure from all sides.<br /><br />Be prepared for things to take a little longer than usual, don't expect the newly-qualified doctor to make big decisions (like allowing you to go home, unless already agreed with the consultant), don't embarrass the new doctor in front of the consultant (no matter how tempting), and don't be rude or uncooperative. If you can educate the new doctor about your condition and treatment plan, they may turn out to be a valuable member of your team.<br /><br />Good luck!Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-24526210092615525902012-07-22T11:39:00.000+01:002012-07-22T11:39:59.472+01:00Hospitals are for the HealthyAs I write this, I am an inpatient on an Acute Medical Admissions Ward. This is a ward designed to take people straight from the Accident &amp; Emergency department and care for them until they are well enough to go home, or until they move on to another, more specialised, ward. There are several teams of doctors that care for the patients on this ward, all led by Consultants who specialise in Acute Medicine.<br /><br />I can't help feeling that this set-up isn't a very good 'fit' for me.<br /><br />Depending on how specific you want to be, I have at least six conditions listed in the 'diagnosis' section of my patient record, none of which are 'acute'. Sometimes I have an acute flare-up of, say, asthma, for which I could legitimately be admitted to this ward. However, the acute flare will always be on a background of chronic 'difficult' asthma, which is a poorly understood condition, even among respiratory specialists.<br /><br />Unfortunately, admitting me for an acute flare-up of asthma is not as simple as admitting someone who is otherwise well. My other conditions still have to be treated and monitored, and sometimes the treatment for the asthma must be modified because of my other conditions and vice versa. This is not always as straightforward as it sounds, and often requires input from multiple specialists.<br /><br />Usually I am transferred quickly from this admissions ward to a more specialist (respiratory or gastro) ward, where I am much more at ease, but for some reason that hasn't happened this time. Which may be because I have an infection, and that was seen (in isolation from my other complex conditions) as a simple, acute problem.<br /><br />Which it isn't.<br /><br />Anyway, I digress. My point was really just that so much of medicine is geared towards admitting people with acute conditions, restoring them quickly to their previously healthy state, and allowing them to go home. Those who don't fit this simplistic mould must be elderly, and therefore can be transferred to the Elderly Care service.<br /><br />The paediatricians are used to seeing children with complex medical needs, and paediatric units are often shining beacons of multidisciplinary care, but somehow this fizzles out as the patients get older. I know that there are other young-ish adults out there with chronic/rare/complex conditions. I read their blogs and follow them on Twitter, but I don't see them in hospitals, and I don't see a system that is designed to care for them. <br /><br /><br />I see a system designed for people who can walk down long corridors for miles and miles, don't require a special or complex diet (vegetarian is probably manageable, but low-FODMAPs or a ketogenic diet - you must be joking!), don't need snacks outside set mealtimes, need minimal help to dress, feed themselves or transfer, can wash independently (in a shower cubicle without a seat), don't have severe allergies to air-fresheners/cleaning products, can hear their name called from behind a screen in a busy clinic, can remember the names and dosages of their medications... I'm sure you can think of so many more examples.<br /><br />Hospitals are designed for healthy people, and I say we need a rethink.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-56678193880471223182012-07-09T19:17:00.002+01:002012-07-09T19:17:28.538+01:00Each Day at a TimeI feel embarrassed when people say that they find me inspirational, or that they admire my courage. I don't feel as though I deserve this sort of praise, and I certainly don't feel brave, or even anything out of the ordinary.<br /><br />Having said that, I'm thrilled to be able to reach out to people in a similar situation (or not), and have made some great friends through this interweb malarky.<br /><br />When I see my own story in print, reading back through this blog, through my medical folder, or speaking to friends and family about some of the events of the past, it does seem almost too much to bear. Certainly, taken all at once, it sounds impossible that anyone could go through these things and come out the other side, relatively unscathed.<br /><br />What this doesn't include is the many good days that I have that make the difficult stuff fade into the background. I have been out of hospital for over four weeks now (not including the three A&amp;E visits when we were trying to work out if my line was infected, or if I was allergic to one of my IV medications). It's not that I forget the bad things - after all, I have scars, tubes and a house full of medical kit to remind me, but there are so many things that balance out the bad things.<br /><br />Each of us assigns 'weight' to the things that happen in our lives. I try to assign as little weight as possible to hospital admissions, procedures, surgery, and other things that are Not Fun, and assign much greater weight to the Good Things in life.<br /><br />Of course there are times when I am absolutely overwhelmed by the things that are Not Fun. So much so that life can feel a bit miserable. But these days pass. They may feel long and impossibly hard, but they pass.<br /><br />And the Good Things? These may be things that many of you wouldn't notice, and that certainly wouldn't brighten your day, but I need these things - to notice them and register them as important in my memory so that the balance of events in my life tilts towards the positive.<br /><br />I wouldn't describe myself as a natural optimist (Optimists live longer than pessimists - "Serves them right" say the pessimists), but I don't want to waste this life by focusing on the negatives. There are enough bad things without making them worse by dwelling on them!<br /><br />If someone read back all the difficult things that I have been through in the last couple of years, I would agree that I would need a huge amount of courage to get through such ordeals. The reality is that I don't go through it all in one go. I have time to catch my breath, gather my thoughts, and have some fun before heading back unto the breach (dear friends). I suppose it's a form of denial or dissociation. I push the difficult things to the back of my mind, focus on the happy times and good people, and get on with life - one moment at a time.<br /><br />Remember this when life seems too much to bear. Each of us has our own burdens to carry, but focus on the happy moments: strawberries warm from the sun, the weight of a sleeping cat and the warmth of her contented dribble, a favourite song on the radio, the smell of cake fresh from the oven. Individually they may seem small in comparison to everything that's wrong with the world, but as I practise more and more, I find that they matter more and life seems better as a result.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com1tag:blogger.com,1999:blog-1992059429124770965.post-15398678683037167242012-06-22T09:30:00.000+01:002012-07-10T23:55:45.050+01:00The Pain OlympicsI've written about this before, so forgive me if you're bored of reading about it, but it's been on my mind. And hey, it's topical (35 days to go until the real olympics). Apologies if you're heartily sick of the olympics. Obviously, this isn't really about sport, so read on.<br /><br />What I mean by the 'pain olympics' is the competitiveness that I've occasionally witnessed from other people with chronic illnesses or disabilities, as though there's a gold medal for the 'most disabled'. The conversation might go something like this:<br /><br />Person 1: I am paraplegic (paralysed from the waist down). This is the worst thing that has ever happened to me.<br />Person 2: I am tetraplegic (paralysed from the shoulders down). You're hardly paralysed. Call that an injury? It's just a slap on the arse. Get yourself a band-aid and a cup of tea and you'll be fine.<br /><br />With some paraphrasing, this is a conversation that I have heard many times in real life.<br /><br />I have to admit that it's tempting to squash the complainers. The people who have a cold and whine for a week. A broken toe? A cut that needed *gasp* two stitches? There are times when I want to tell them to look around and try to gain some perspective; to tell them that they have no idea what 'serious' pain is like.<br /><br />&nbsp;But I don't.<br /><br />Why?<br /><br />Because where do you draw the line? <br /><br />What counts as serious and 'worthy' of sympathy? There will always be someone in a worse position - more paralysed, in more pain, more limited by their disability, in hospital for longer, requiring more care or more surgical intervention. There will always be someone younger, more courageous, more inspirational; achieving more against the odds.<br /><br />Complainers, we love you and want to be supportive, but think carefully about what you're saying, and who's on the receiving end of your whining. Telling someone with digestive tract paralysis who is totally unable to eat about the awful morning sickness that is putting you off your organic muesli may not earn you much sympathy.<br /><br />Sick people, try not to be too judgemental. Imagine how much we could achieve if we supported each other instead of thinking up new and original cutting remarks to put people in their place if they dare to complain about something as minor as, say, childbirth.<br /><br />For me, the progression of this illness is the worst thing (or one of the worst things) I've ever experienced. I know that there are people in a worse position than me, and I can't imagine how strong they must have to be to get through each day. I rely on these people to inspire me to find the inner strength that I need to seek out the joy in life when it seems impossibly hard. I am so grateful that they don't belittle my experience, though it's nothing in comparison to what some of them are living through on a daily basis.<br /><br />There is no gold medal for having the most serious illness. The only achievements in life are those we earn, despite our circumstances, not because of them.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com3tag:blogger.com,1999:blog-1992059429124770965.post-36937349333479304132012-06-14T19:06:00.000+01:002012-06-14T19:06:47.273+01:00Life-Limiting IllnessOne of the things that has really hit home over the last few months, as I've spent so much time in hospital, is that my illness is progressing. I have known for a long time that I probably wouldn't live to be 100 to receive a telegram from the Queen (or perhaps King, by then!), but with each new problem, it seems increasingly likely that I may be lucky to make it to 50.<br /><br />I've lived with severe 'brittle' asthma for almost all my life. I also have severe allergies. Either of those could kill me. While thatt makes it a bit scary when I have an asthma attack or anaphylactic reaction, most of the time I can forget about those and put the thoughts of death to the back of my mind.<br /><br />More recently, as my GI tract has shut down, my autonomic dysfunction has become more pronounced and my blood sugars have become more difficult to control, I have needed more day-to-day medical support.just to remain stable. I have a jejunostomy tube for medications and low-volume feeding, and a Hickman line (permanent IV line) for medications and IV fluids. My team are gearing up to start me on parenteral (IV) nutrition, which carries with it many risks. Risks of bloodstream infection (septicaemia), liver damage and blood clots, to name just a few. I know that these risks are small in comparison to the guaranteed complications of starvation and malnutrition, but they are still significant. <br /><br />I can accept the restrictions that my illness has placed on my life. I am still so grateful to be alive, and to have the opportunity to experience this wonderful world. But I don't feel ready to die. Not now, and not in five or ten years. Probably not even in 20 years. There are still so many things that I want to experience. I want to grow old with my husband. I want to see our friends' children grow up, and to have nieces, nephews and godchildren, and to be there for them. I don't want to miss the conversations, the celebrations; even the bad times. I want to be there to comfort my husband, friends and family; to grieve with them in the sad times and rejoice with them in the good. <br /><br />I am not afraid of death. I just don't feel ready to stop living.<br /><br />My husband and I are very open with each other about this. We both know that I have a life-limiting illness, and we live accordingly. We seize our opportunities when they arise - who knows what might be impossible for me by next year or the year after? We talk about funeral plans and end-of-life decisions for both of us. We discuss the things that are important to us about medical care, our thoughts on remarriage, what we want to happen to our bodies after death, and how we want to be remembered.<br /><br />During one of these conversations, I asked my husband how he copes with the thought that I will die before I'm old. His response?<br /><br />"I will love you for as long as I have you. And then a bit longer."Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-88499300498199094492012-06-03T13:28:00.000+01:002012-06-03T13:28:58.951+01:00MilestonesIn some paediatric cancer units, the children are allowed to choose a bead for every medical intervention - each blood draw, chemotherapy dose, x-ray, etc. is recorded onto a long string of beads: their entire cancer journey mapped out in bright colours.<br /><br />I often think about doing something similar - creating some outward recognition of the medical procedures that I've survived, but it's hard to know where to start. Lots of the things that have happened over the last few years are things that I barely want to remember, let alone celebrate. I don't have an illness with a finite treatment course, so I can't celebrate the end of treatment, clear scans or definitive surgery. The nature of my condition seems to be gradual decline, with various medical interventions along the way, as they become necessary. That's hardly something to be commemorated!<br /><br />I have a Pandora bracelet with a single bead on it, named 'The Eye of the Storm'. It was given to me by a friend after I spent several days on a ventilator following a respiratory arrest. Of course it's a reminder of a scary time, but far more than that, it reminds me that I can seek refuge in my friends, even in the middle of huge medical 'storms', and that I don't have to find strength in myself alone.<br /><br />This year, things have changed dramatically in my body. Losing the ability to eat normally has been devastating, and I suddenly have tubes and lines as a constant reminder of the support that my body now needs. I have a jejunostomy tube (a feeding tube into my small intestine) and a 2-3 inch surgical incision next to it. I have a Hickman line (an IV line that comes out of my chest and ends up next to my heart) for fluids, nutrition and medications. Sometime in the next few months, I expect to have a gastric neurostimulator (like a pacemaker for my stomach) fitted, which will be under the skin on my abdomen, meaning another surgical scar.<br /><br />I think now is the time to add the next bead to my bracelet. <br /><br /><br />These new medical interventions have become my lifelines. Not tying me down (though I do have to be very careful when rolling over in bed while hooked up to three different pumps!), but freeing me - they give me the medications, the nutrition and the hydration that I need to function, and I feel so much better for it, despite resenting the intrusiveness of the tubes. I am grateful to have some colour in my cheeks (that I didn't have to paint on!), and am glad that my skin is starting to look smooth and bouncy, rather than reptilian and tissue-paper thin.<br /><br /><br />For the first time in a very long time, almost all my symptoms are controlled for at least part of the time - I am well-hydrated, am beginning to be well-nourished, and am absorbing the medications that I need. I'm not 'fixed' but I feel optimistic about good days ahead - days when I can go out, visit friends, entertain at home. There are so many exhibitions that I want to see (not least, Christian Louboutin at the Design Museum) and places that I want to visit. Even the thought of being well enough to get up and dressed and go out to read a book in the park fills me with glee!<br /><br /><br />This is what my second Pandora bead will represent - the freedom and opportunity that I gain from my new lifelines.<br /><br />My lifelines - my hope for the future.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-16249037715195398482012-05-29T10:45:00.000+01:002012-05-29T10:45:56.023+01:00Life's Too ShortOn days like this I feel very glad that I'm not a health professional.<br /><br />I strongly believe that people are entitled to the same quality of care, regardless of politics, social status or the cause of their condition. And yet I can't help feeling anger and frustration when I see people in hospital with me, apparently hell-bent on self destruction.<br /><br />I can't help but think of the people I know who live so fully despite failing bodies - friends who have fought with everything to achieve their dreams in the face of unbelievable adversity. I think about the joy that these friends wring from every last little drop of life, despite knowing that life will be considerably shortened by illness, and the generosity with which they share their zest for living with those around them.<br /><br />I can't help but think of the things that these people would do if they were given the opportunity to inhabit healthy bodies, like the ones that the people around me are destroying. It would be unfair of me to suggest that everyone should seek to change the world in big ways just because they have a strong and healthy body, but I wish that I could show these people how lucky they are.<br /><br />I wish that I could make them appreciate the pleasures of eating good food in moderation, of having limbs that support their weight without pain; the satisfaction of a deep breath, and of the feeling of sun against bare skin. I wish that I could encourage them to make the most of every conversation; every sight and sound and touch and smell. I wish that I could give them some of the enthusiasm and love of life that so often comes to those of us that are constantly reminded of how short and precious life can be.<br /><br />I resent the casual way in which some of my fellow patients treat their bodies, hardly seeming to care whether they live or die, and I feel angry that they've brought suffering on themselves by smoking and drinking and taking drugs and eating excessively, but most of all I feel sadness for them and all the things that they're missing.<br /><br />Ferris Bueller got it just right when he said, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com1tag:blogger.com,1999:blog-1992059429124770965.post-51889727097840788392012-05-27T17:52:00.000+01:002012-05-27T17:52:41.851+01:00Visible Reminders of IllnessEvery so often the question arises about whether it's 'better' to have a visible illness or an invisible one.<br /><br />Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.<br /><br />I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.<br /><br />Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.<br /><br />It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.<br /><br />Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.<br /><br />But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-53403093269969944012012-05-22T22:49:00.000+01:002012-05-22T22:49:58.981+01:00Is it ok to be scared?Of course it's ok to be scared.<br /><br />Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.<br /><br />The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.<br /><br />&nbsp;I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.<br /><br />One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.<br /><br />Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living <i>despite </i>the condition.<br /><br />Fear is one of those things that can seriously get in the way of living a productive life despite illness.<br /><br />For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.<br /><br />I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!<br /><br />Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!<br /><br />Am I still scared?<br /><br />Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-13924043978180124182012-05-20T13:50:00.000+01:002012-05-20T13:51:26.650+01:00CourageA favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).<br /><br />This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.<br /><br />My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.<br /><br />Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.<br /><br />Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?<br /><br />Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.<br /><br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com2tag:blogger.com,1999:blog-1992059429124770965.post-26312133651561850932012-03-27T18:47:00.000+01:002012-03-27T18:47:25.319+01:00Being kind to myselfI have been feeling sad since I got home from hospital at the end of last week.<br /><br />Instead of feeling grateful for the delicious soups, smoothies and ice lollies I can eat, I have grieved for the things that I can't eat. I stood in front of the sandwich counter at my local shop yesterday and sobbed about not being able to eat the cheese and pickle that I craved. <br /><br />Instead of feeling grateful for my big, comfortable bed and fluffy pillows (and the wonderful husband and cat that share the bed with me) I resent my 'snuggly prison' and dwell on the places I would rather be. I think of the exhibitions I'm not visiting, the full-time job I'm not doing, the friends I'm not seeing.<br /><br />My hair is falling out in clumps and the little that I have left is dry and frizzy. My nails are cracked and brittle, flaking and ridged. None of my clothes fit because I have lost so much weight in the last couple of months. Even the beautiful lingerie that I wear to feel secretly sexy under my comfortable, disability-friendly clothes no longer fits properly. I feel sad to be losing the curves that have defined my body shape for so many years.&nbsp; <br /><br />Deep down, I know that this isn't a helpful attitude, but how to change things for the better?<br /><br />First of all, I have decided to take some time to look after myself. I don't know why I am so much harder on myself than I would be if it were one of my friends in this situation, but I am. That has to change - charity begins at home, right?<br /><br />Where do I start?<br /><br />1. Take a long, hot bath <br />2. Paint my nails<br />3. Smother myself in my favourite body lotion<br />4. Put on my prettiest pyjamas <br />5. Play some feelgood music<br /><br />That done, I'm ready to adjust my attitude.<br /><br />I feel sad because I can't eat the things that I want to eat. I can't change that, but I can decide to appreciate the liquid diet that I have. So many people with the same condition as me are not able to eat at all. <br /><br />I feel sad because I am stuck at home and isolated. So, I need to invite some friends round! A friend who lives nearby dropped in today just on the offchance that I was home and free. It made my day. It wasn't an issue that I couldn't eat, or that I couldn't do much more than sit. We chatted and laughed, talked about books and politics and husbands, listened to music and planted seeds. My friend went home after a couple of hours, leaving me feeling more uplifted than I have felt in weeks.<br /><br />It's very easy to become isolated when even getting dressed is a chore, but I'm beginning to realise that my soul craves company.<br /><br />So, my first new resolution is to make sure than I see someone other than my husband at least once a week. I'm not going to beat myself up if I don't look perfect with freshly-washed hair and a well put-together outfit, or if we don't do anything more than watch a film together or even just sit in the garden with the cat and the newspapers.<br /><br />My second resolution is to wear lipstick At All Times. I love lipstick. It makes me feel confident. I talk a lot about my Brave Face. This is the face that I present to the world, that can deal with the medical world and all its pessimism. Of course it slips occasionally, and I'm not saying that it's not ok to cry sometimes, but lipstick helps the Brave Face to stay in place when I need it. <br /><br />Thirdly, and finally, I am going to ask for help when I need it. I love having the opportunity to help others, so why do I find it so hard to admit that I can't get through this alone?&nbsp; <br /><br />1. Spend time with friends<br />2. Wear lipstick<br />3. Ask for help<br /><br />Simples!Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com0tag:blogger.com,1999:blog-1992059429124770965.post-58663034675031232882012-03-24T16:01:00.001+00:002012-03-24T16:02:57.378+00:00Health Update (and soup recipe)I am currently in the middle of a big flare-up of gastroparesis, which started about two months ago. Prior to this flare, I could eat small amounts of most things, and though I often felt nauseous, bloated and uncomfortable, these symptoms were controllable with medication and other techniques. Currently, I'm not able to eat anything solid, and have just spent a week in hospital, where I had some injections of Botox into the lower opening (pylorus) of my stomach. Normally the pylorus holds the stomach closed until the food has been churned and mixed enough for it to be allowed to continue on its journey through the digestive system. The Botox relaxes this muscle, meaning that the food doesn't get stuck in my stomach, but can just drain through by gravity.<br /><br />I have been advised to stick to a liquid diet, at least for the next few weeks, until we know how effective the Botox has been.<br /><br />I've lost quite a lot of weight since the start of this most recent flare, so my Gastro team (especially my wonderful dietician) are keeping a close eye on me.&nbsp; It doesn't help that I was already deficient in iron, vitamin D and vitamin B12 - that means I don't have the luxury of a 'nutrient store' to keep me going while I'm not able to eat much. My dietician is watching over me like a hawk with the intention of starting tube feeding as soon as it becomes medically necessary. What we don't want is for me to get to a dangerously low weight (with associated nutritional and electrolyte deficiencies) before anything is done. Having said that, I don't really want to be tube fed at all, either through a temporary NJ tube (from my nose, through my broken stomach and into my small intestine) or through a more permanent tube (PEG-J or PEJ) that would go into my small intestine directly through the skin on my abdomen.<br /><br />I'm not saying that I can't see the advantages of tube feeding - of course I can. It would take away the pressure of constantly pushing myself to eat and drink despite symptoms; it would give me a way of getting enough calories and other nutrients relatively easily; would stop the weight loss. But it also means a surgical procedure (for the PEG or PEG-J), a tube going into my body 24/7, having to carry a pump and feed around with me (at least initially, if I need to run the feeds during the day as well as overnight). And, of course, it means another visible reminder of what this illness is doing to my body.<br /><br />So, for now, I will continue to eat and drink as much as I possibly can, and will see what happens. <br /><br />While in hospital, I couldn't help noticing that almost everything offered to me was sweet. Fortisip milkshakes come in a range of sweet flavours (mocha, chocolate, strawberry, forest fruits, vanilla), and the vitamin/protein-enriched juices are much the same. When my blood sugar was low, I was offered Lucozade and glucose tablets. I have found myself desperately craving other flavours - bitter, sour, salty.<br /><br />The obvious answer to this (apart from drinking gherkin juice and licking salt and vinegar crisps) is soup. Now that I'm home, I have access to real ingredients, and I am looking forward to eating a range of delicious and varied soups. Last night I had roast butternut squash, carrot and coriander soup. Today is hot and sunny, and just screams 'Gazpacho'! I'm not going to argue with that. I love gazpacho anyway, but the thought of it now, after a week of simple, repetetive flavours makes me want to dance with excitement.<br /><br />People have been kind enough to share their favourite soup recipes with me via Twitter and email, so I'm building up quite a list. From initially feeling a little bit overwhelmed at the thought of eating nothing but soup, I'm now starting to see the possibilities. From silky-smooth leek and potato to the sharp, cold gazpacho, elegant French onion soup, with its dark, caramel undertones and spicy Thai soups, rich with coconut milk and chilli. This doesn't have to be a limited diet!<br /><br />The recipe that I'm using for my gazpacho is from Sarah Raven's Garden Cookbook. It serves 6-8 people at normal size portions. Obviously, I will be freezing most of mine!<br /><br />Ingredients:<br />3-4 thick slices of slightly stale white bread, crusts removed<br />2 cloves of garlic<br />Generous drizzle of olive oil<br />1 1/2 tbsp red wine vinegar<br />675 g tomatoes<br />2 sweet red peppers (from a jar, or roasted and skinned)<br />1 large mild onion<br />1 small cucumber<br />425 ml tomato juice<br />Salt and black pepper<br />A few fresh chives<br /><br />Method:<br />Tear the bread into small pieces and put them into a large bowl.<br /><br />Crush the garlic and add it to the bread. Add just enough oil for the bread to absorb, and then stir in the vinegar. Skin, deseed and chop the tomatoes.<br /><br />Chop the peppers and roughly chop or grate the onion. Deseed and chop the cucumber. Add these to the bowl and mix well. Add the tomato juice and season with salt and pepper.<br /><br />Blitz the whole thing with a stick blender, or put the mixture into a food processor and process until smooth.<br /><br />Check the seasoning and add iced water to get the consistency you want. Chill and serve very cold, with a few fresh chives chopped over the top to garnish.&nbsp; <br /><br /><br /><br />Johttp://www.blogger.com/profile/14682125599431651877noreply@blogger.com2